Patients' information needs and decision-making processes: What can be learned from genetic counselees?

Shiloh, Shoshana; Gerad, Liora; Goldman, Boleslav

doi:10.1037/0278-6133.25.2.211

Cited by 33 publications

(23 citation statements)

References 53 publications

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“…Counselees suggested that because none of them had received uncertain or positive test results, their memory of which uncertainties had been discussed (before testing) might have been tainted. Second, other studies have shown that counselees mainly focus on receiving an answer to their genetic question during counselling and may not be open to receiving additional information (Michie et al 1997; Shiloh et al 2006). Counsellors should be aware of this when providing additional information to counselees, such as uncertainties.…”

Section: Discussionmentioning

confidence: 99%

Uncertainty related to multigene panel testing for cancer: a qualitative study on counsellors’ and counselees’ views

et al. 2018

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Multigene panel testing is mainly used to improve identification of genetic causes in families with characteristics fitting multiple possible cancer syndromes. This technique may yield uncertainty, for example when variants of unknown significance are identified. This study explores counsellors’ and counselees’ experiences with uncertainty, and how they discuss uncertainties and decide about multigene panel testing. Six focus groups were conducted including 38 counsellors. Twelve counselees who had received genetic counselling about a multigene panel test were interviewed. The focus group sessions and interviews were audio-recorded and transcribed verbatim. Transcripts were analysed inductively by two independent coders and data were examined to obtain a comprehensive list of themes. Counsellors identified several uncertainties, e.g. finding a variant of unknown significance, or detecting an unsolicited finding. Most difficulty was experienced in deciding what uncertain information to communicate to counselees and how to do so. The extent and manner of providing uncertain information differed between centres and between counsellors. Counsellors attached more value to counselees’ preferences in decision making compared to less extended tests. Counselees experienced difficulty in recalling which uncertainties had been discussed during genetic counselling. They primarily reported to have experienced uncertainty about their own and their relatives’ risk of developing cancer. Counselees felt they had had a say in the decision. This study showed that counsellors need more guidance on whether and how to convey uncertainty. Undesirable practice variation in the communication of uncertainty may be prevented by determining what information should minimally be discussed to enable informed decision making.

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Section: Discussionmentioning

confidence: 99%

Uncertainty related to multigene panel testing for cancer: a qualitative study on counsellors’ and counselees’ views

et al. 2018

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“…Scholars have demonstrated that individual representations of risk vary greatly and that it does not suffice to provide information about risk; rather, health care providers need to explore these representations and move towards a more collaborative understanding of risk in order to facilitate informed decision-making for those considering predictive genetic testing (Cox and McKellin 1999;Ozanne et al 2010;Parsons and Atkinson 1992;Shiloh et al 2006). The findings of this study support that work and point specifically to the need to create a relational space (e.g., common meeting place), wherein the users of genetic services, genetic counsellors, clinicians, and scientists can explicitly discuss competing ideas about risk using a multidisciplinary approach.…”

Section: Discussionmentioning

confidence: 99%

Making the Decision to Participate in Predictive Genetic Testing for Arrhythmogenic Right Ventricular Cardiomyopathy

Manuel

2014

Journal of Genetic Counseling

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This paper describes the experience of predictive genetic testing for Arrhythmogenic Right Ventricular Cardiomyopathy in the context of novel gene discovery. Two approaches to making the decision to engage in genetic testing were apparent: the decision to be tested either (a) develops gradually over time or (b) happens so quickly that it is felt as a "fait accompli." Six key factors that influenced the particular approach taken by the participants were identified: (1) scientific process--available and relevant predictive genetic test; (2) numerous losses or deaths within the family; (3) physical signs and symptoms of disease; (4) gender; (5) sense of relational responsibility or moral obligation to other family members; and (6) family support. This study found that at risk individuals juxtapose scientific knowledge against their experiential knowledge and the six identified factors in order to make the decision to participate in genetic testing. Recommendations include the creation of a relational space within which to provide psychological counselling and assessment for the six identified factors that shape the decision to engage in predictive genetic testing.

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“…asking whether the individual has been involved in the treatment or the caretaking of family members affected by cancer and questions related to the individual's views on cancer cure. Hereby, factual risks can be discussed in relation to the individuals' experiences and feelings, which may contribute to a learning process shared by the patient and the genetic counsellor (Shiloh, 2006;Shiloh et al, 2006). The informants described coping strategies and referred to the implications that the genetic knowledge had on their life situation.…”

Section: Discussionmentioning

confidence: 99%

Living with Hereditary Non‐polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing

Carlsson

Nilbert

2007

Journal of Genetic Counseling

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Hereditary nonpolyposis colorectal cancer (HNPCC) is one of our most common cancer syndromes and an increasing number of individuals live with knowledge about HNPCC carrier status. We conducted an interview study in order to investigate the perceived impact on life after genetic testing for HNPCC. Three themes emerged; reactions and emotions, family relations, and implications and strategies. The informants referred to experiential knowledge of cancer, information responsibilities, impact on family relations, and coping strategies. Most informants had suspected hereditary cancer, but confirmation hereof was described as an overwhelming experience and often brought about changes in life. We suggest that the importance's identified, e.g. the impact of experiential knowledge and the impact on family relations, should be taken into account during genetic counselling in order to facilitate information spread and prepare family members for the impact that the genetic knowledge may have on life.

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Patients' information needs and decision-making processes: What can be learned from genetic counselees?

Cited by 33 publications

References 53 publications

Uncertainty related to multigene panel testing for cancer: a qualitative study on counsellors’ and counselees’ views

Uncertainty related to multigene panel testing for cancer: a qualitative study on counsellors’ and counselees’ views

Making the Decision to Participate in Predictive Genetic Testing for Arrhythmogenic Right Ventricular Cardiomyopathy

Living with Hereditary Non‐polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing

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